The Shadow Puppet

Jim O. Neal The Shadow Puppet

Sandra vividly remembered the day she realized, or admitted to herself, that something was wrong with Ethan. She was sitting on the floor of the living room with Ethan lying on his back on the carpet. Her husband, Will, was relaxed in his recliner watching a football game. Dylan, her older son, played by himself in his room. Over the sound of the announcers on television, she could faintly hear toy trucks crashing together.

Ethan squirmed and looked around the room. He was nine months old, beyond the age that he should be rolling over and even sitting up on his own. “Come on, sweetheart,” she said, “let´s try again. You can do it.” Sandra picked him up under the armpits and sat him on his butt, held on until she thought he had his balance, then slowly let go. He immediately fell over, and would have bumped his head on the floor had she not caught him. “Damn it,” she whispered. “That was better. You’re getting closer,” but he wasn’t, and she knew it.

She had already made the effort a thousand times with the same result so she returned him to his back, pulled up his shirt and blew on his stomach. She lifted her face to laugh with him, but Ethan gave no response, just kept on with his flailing. She tickled his ribs, his feet, under his chin, and got no laughter. She had great memories of playing with Dylan when he was this age, tickling him and listening to him giggle.

She put her finger into Ethan´s palm hoping he would grip it. He didn´t. “Are you here, Ethan? Are you here with me?” She didn’t know what she was trying to ask him, but she had to try to get an answer. She felt rejected and needed a connection that she wasn’t getting, but putting it into words was difficult. Will had insisted that they take him to the doctor months before because he was such a difficult baby, but they had reassured Sandra that there was nothing medically wrong with Ethan. Babies were difficult sometimes, the doctors told her. He would grow out of it. She believed them.

Playing with Ethan on the floor that day, she finally let herself feel that it wasn’t right. He should be rolling around, sitting up, trying to crawl. She should at least be able to get a laugh out of him with a tickle.

“Will, honey, I think something is wrong with Ethan,” she said.

Will didn’t take his eyes off the screen. “Yeah, I know,” he said.

“No, Will, listen. I think I know what is wrong with him.”

“Oh, what is it?” He leaned forward slightly. “Come down here. I need to show you.” Will pulled himself out of the chair and squatted down beside her. Sandra started crying as she tried to tell him. It sounded so crazy in her head but the closer she got to saying it the more certain she became. “He can’t feel me,” she said, starting to cry.

“Hey, calm down. I’m listening. What do you mean he can’t feel you? I don’t understand what that means.”

Sandra put all her effort into composing herself so she could get the explanation out. She wiped her eyes with her sleeve, and looked up at Will. “I mean that he can’t feel when I

touch him. Watch,” she said as she pulled his shirt up above his belly.

She tickled him and rubbed him. There was no reaction. He seemed to not notice at all. He just continued to swing and kick his limbs with a blank expression on his face. Will reached in and patted his belly—nothing. Then, he pinched the skin on Ethan’s stomach a little too hard. Ethan screamed. Sandra looked up at Will in confusion.

“I don’t know. He definitely felt that.” “I’m just sure something is wrong, Will. I know it.”

“We’ll take him back to the doctor, see what they think.”

They took Ethan to their family doctor, the only one in their tiny little town. He didn’t have the tools or experience to deal with something like this so he sent them to a doctor in the next town, a thirty-minute drive away. That doctor did his best and passed them along to the nearest city, two hours from home. It was weeks before they finally got to someone who could help.

After a couple of visits, the doctors confirmed what Sandra already knew, but they didn’t understand what was causing the problem. Through some simple tests they determined that Ethan couldn’t feel tactual stimulation, except, inexplicably, infliction of pain. None of the doctors had ever heard of such a thing. They did blood tests and neurological testing, but were still baffled. The best they could do at the end of it was send Will and Sandra to the pharmacy to pick up a bag full of prescriptions.

Losing hope in finding a medical explanation, Will and Sandra devoted their time to coping and just dealt with the difficulties. They didn’t understand what Ethan was going through, but learned to accept his behavior and adapt, acting practically, trying to adjust.

The doctors continued to search for the answers and, finally, tracked down a neurologist who had worked with a patient with similar symptoms half way across the country. Because he was one of the only doctors who had worked with such a case he flew in just to see Ethan. He was able to confirm that Ethan had the same disorder as his patient. He explained the disease and gave them a gloomy scenario. “Mr. and Mrs. Hicks,” Dr. Simon began, “Ethan is dealing with an extremely unusual impairment of his sense of touch.” He was concerned, but his expression gave away his fascination with Ethan’s case. “It’s a disorder in his peripheral nervous system, the nerves connecting his limbs and body to his spinal cord. His sensory nerves, the ones that convey information from the periphery to the central nervous system, aren’t functioning properly. We all have small receptors that receive touch in the skin and convert it to electrical impulses that are sent to the brain. Ethan doesn’t have this system.”

“Ok,” Sandra responded. “How did this happen to him?” She dreaded having to ask that question, fearing that she had somehow caused it. The small room, with plain white walls and official looking certificates in cheap faux-wood frames, seemed like a place where only bad news was delivered. She became uncomfortable with the carpet her feet rested on. The tears it must have absorbed over the years made her feel sick.

Dr. Simon had to admit that he didn’t have all the answers. “Honestly, I don’t know. There are only a few cases known in the world, and those have all happened later in life, to adults. I’m not aware of a single case of someone being born with the disorder, although it’s quite possible that babies have been born with this condition but not survived long enough to be diagnosed. It is most likely from a viral infection that has attacked his nerves. Look, Mrs. Hicks, I know there is a tendency for parents to blame themselves, but I can’t stress enough that you didn’t do anything to cause this.” Sandra was relieved to hear that, but she wasn’t totally convinced. She looked at the ceiling and wondered how many people had done the same thing, hoping to get a better view from that cold plastic chair.

“Dr. Simon, I really don’t understand all this,” Will said. “I mean, how is this making Ethan so difficult? He won’t even go to sleep.

What the hell does his sense of touch have to do with that? It’s a miracle every time we get him to eat.”

“Well, there’s more to it than what you think. Since we all have it, most of us don’t even realize how important our touch sense is. The peripheral nervous system, where Ethan’s impairment is, also provides information from deeper in the body, from muscles and tendons. This information tells us about where our muscles and body are in space, in the absence of vision. Ethan likely has no spatial awareness in his body. When he closes his eyes he must feel as though he has lost contact with his body completely. I’m sure it’s very frightening for him to lose sight of himself. That’s probably why he won’t go to sleep. He’s afraid.”

“Wait a minute, though. Ethan cried when I pinched him earlier. He definitely felt that,” Will added, confident that he could somehow prove the doctor wrong.

“Well, there are actually separate receptors in the skin that pick up on pain and temperature sensations, and also muscle fatigue. Ethan apparently has these. This is extremely important. Without these Ethan would have a much harder time.”

Doctor Simon told them that Ethan would never be able to walk or talk. The adult patient that he had worked with was confined to a wheelchair, could barely communicate, and had to be fed intravenously because she couldn’t control her lips and tongue. She couldn’t chew. She couldn’t even swallow on command. “Listen, Mr. and Mrs. Hicks, this is not going to be easy for Ethan, or for your family. We will do everything we can to help Ethan deal with this, but I don’t want to imply that his condition will improve. I see little hope for that. What I suggest you focus on is giving Ethan all the love you can give him.”

Dr. Simon went on to explain that otherwise healthy children who aren’t touched enough don’t grow normally, have much weaker immune systems, and lack social skills. They have lower intelligence and shorter life spans. A baby that isn’t touched at all dies.

Sandra was hysterical when they left the

office. “That is total nonsense!” They had finally gotten some answers, but she felt she couldn’t accept what Dr. Simon had said about Ethan’s future. He didn’t know Ethan, didn’t know her. “That’s just not going to work for us. We can teach Ethan to eat. I mean, give me a fucking break! I’m supposed to believe that my son won’t even be able to eat?”

“Sandra,” Will said, “He’s a doctor. I’m sure he knows what he’s talking about.” “Nonsense! I’ll teach him to eat.”

Sandra had always been in the habit of checking in on the boys while they were sleeping. When it was just Dylan, she would quietly open his door and look at him right before she went to bed. After Ethan was born, she added one more check in during the night. She woke up promptly at two in the morning and snuck to their door to make sure they were okay.

One night, when Ethan was three and Dylan was six, she noticed something peculiar. She saw Dylan lying on his back in his bed, one arm raised straight to the ceiling and the fingertips of the other hand stroking the length of the bare, up-stretched arm, tickling it. After tickling the arm for a minute he curled his fingers to scratch the arm lightly with his nails. He was still asleep.

This wasn’t the strange part. She had seen him do this many times before. It struck her as kind of weird but she always got a little laugh from it. It was so cute. What she noticed this night was that Ethan was watching him do it. She stayed a few minutes longer and Dylan finished his routine. Once he put his arms down and rolled over on his side, Sandra saw Ethan’s head roll back to face forward. His eyes remained open. She stayed until she was too tired to stand. Ethan was still awake when she left.

The next night, Sandra returned and found Ethan awake. This time, she realized he was staring at a spot on the bed beside him. He didn’t take his eyes off of it. Again, she stayed as long as she could, until she started to fall asleep while standing.

This went on for several nights. Sandra was so confused about what her little guy could be doing awake so late at night until, finally, something happened. It was the same as the previous nights. Ethan was awake, lying on his back staring at something beside him. Just as Sandra had decided to go back to bed, Ethan’s hand slowly levitated off the bed, first a few inches then a foot.

Sandra clamped her hand over her mouth to keep from squealing. Her eyes welled up with tears. Ethan could always move, but she knew immediately that this was different. Ethan had controlled his movement, something he had never done before. He had been staring at his hand, willing it to move. His hand suddenly fell. Ethan’s body was more like an inert object, like a lamp across the room, than it was a part of him, something connected to his mind. He had to move it remotely using intense mental concentration, replacing the functions of the body that normally happen without thought by essentially controlling these functions manually. A person attempting telekinesis would look much the same as Ethan did when trying to control his body, and his movement was only slightly less miraculous.

This felt like a huge victory for Sandra, and she used her newfound enthusiasm to help Ethan build on his abilities. Once he had learned that sight was such a useful tool, he was able to apply it to other movements. It took him hours of concentration and practice over the course of months to learn basic maneuvers.

Even a year later, when Ethan was four, Dylan still carried him almost everywhere he went throughout the house. Ethan could simply point his eyes towards where he wanted to go and give a grunt, and Dylan would correctly interpret and deliver him.

“Dylan, if you carry your brother around everywhere he’s never going to learn how to walk. Would you please not do every little thing for him?”

“I’m just helping. He likes it.” “Well I know he likes it. Who wouldn’t like to be waited on hand-and-foot? But he has to learn to do things on his own.”

“He needs help, Mom. He can’t do it on his own.”

“You’re right. He does need your help, but he doesn’t need you to do everything for him. What he needs is for you to encourage him to help himself.”

Her reasoning was sound, but it was difficult to convince Dylan. “New rule,” Sandra said. “From now on, Ethan has to try to do everything for himself before anyone can help him. If he can’t accomplish something after he’s given it a good effort, one of us will help him. Got it? That goes for you, too, Dad.” Will was almost as bad as Dylan, although not quite as open about it. He would be Ethan’s right hand while Sandra wasn’t around, but in her presence he was disciplined in the approach she preferred. “I mean, look at him,” she said, looking down proudly at Ethan sitting on the floor, slightly propped up with pillows. “Look at how much better he’s doing.”

Sandra praised him for even the simplest accomplishments. Will and Sandra were thrilled by watching him sit on the floor and stare. It was almost as if he were a little monk, meditating. They watched him like he was a magician doing something they couldn’t quite follow. They studied him.

At first he could move his legs only while he was sitting, but then he learned to stand on his own by holding onto the wall or a piece of furniture and keeping his eyes on his legs, keeping those muscles flexed. His legs had to be locked in order for it to work. Once Sandra saw Ethan making progress, she started challenging him to do more. She stood him up next to a piece of furniture and placed his hands on it. The whole room was totally silent so he could concentrate on all he had to maintain. He focused on his hands, midsection, and legs, all at once. She slowly let go of him when she felt like he was stable enough and, just like that.

“Oh, my baby can stand! My little guy can stand on his own!” Sandra screamed.

They clapped and shouted and laughed with excitement, causing Ethan to get distracted and

fall, and then they did the whole thing over again.

Sandra became obsessed with her effort. She could think of nothing else but working with Ethan to learn to walk. It was the most important thing she could think of. She couldn’t imagine him going through his whole life without being able to move on his own, couldn’t accept it.

Will finally figured out what Ethan needed to help him along. He came home one day with a walker he had welded together from scrap aluminum.

“Try that out little buddy,” he said as he presented the gadget. “It’s not very pretty to look at, but I think it’ll help.”

It was still difficult and frustrating, for all of them, but Ethan didn’t seem troubled by the effort. He made slow, patient progress.

“Fay fomefeem,” he said. These were his first words, spoken to his own reflection. He was eight years old.

He had for a long time been making noises to himself and trying to shape those into words, but he could never get beyond a sort of singing sound. The difficulty was that he couldn’t see his tongue well enough to tell it what to do like he did his with his hands and legs. Eventually he was able to work around that by looking into the mirror and learning how to make sounds his tongue would normally make using his lips instead, the reverse of what a ventriloquist does. Finally, it came out, “Say something.” He smiled at himself. “Say something,” he repeated.

During dinner, he steered his walker into the living room where Will, Sandra, and Dylan were eating and watching television. He sat down in his chair and, with unsteady hands, lifted a small mirror to his face and said, slowly and carefully, with a shaky voice and slur, “Pweav paff ve popapoev.” They all stared at him silently, in disbelief for several moments before all at once coming out with laughter and praise.

Sandra covered her mouth with her hand and fought back the tears. She got up from her chair and gave him a hug. “Do it again,” she said. “Say something else.”

Ethan slowly lifted the mirror while Sandra waited. “I´m humbwy,” he said.

She had hoped for “I love you, Mom,” or, “Thank you for all your help over the years,” but whatever he said was beautiful to her.

“You know what would make this place a whole lot better,” said Monroe, Will’s best friend. “We need to build a screened in porch here.” They were sitting outside the back door, drinking beer and looking out at the back yard. “That´s not a bad idea,” Will said as he swatted at a mosquito on his face. “It would protect us from these damned bugs.”

“We could put in a little ceiling fan, too. That´d be nice.”

They each took a drink of beer from their warm cans and thought it over a little more.

“You think we could get some of the guys to help?”

“Hell, if you cook some pork and brisket on the smoker, fill up a cooler with beer, you´ll have thirty guys over here swingin´ hammers. We´ll get Monk to throw us aside some wood from the lumber yard. Piece o´ cake.” “Alright, let´s do it next weekend.” Monk was the first to arrive on Saturday morning at just a little past seven. He drove the delivery truck from the lumber yard where he worked, carrying bags of concrete mix to set the posts, a roll of screen, shingles, and the lumber they would need. Will only paid for about half of it, and didn’t feel bad about it. Monk had worked at the lumber yard for not enough money since high school. He knew the place and the customers better than anyone so there was no risk of being fired.

“Hey, Willy,” he said as he jumped out of the truck.

“Morning, Monk. Think this’ll do it?” Will refilled his cup of coffee.

“I know where there’s more, if not.” The rest of the guys started trickling in half an hour later and waited for Jones to show up with the bloody maries. They all needed one and no one made them like Jones did. Monroe

was the last to show, already on his second beer from the drive into town.

Ethan and Dylan were just waking up as the commotion began. Dylan rushed to get his jeans and t-shirt on and, after gulping down a bowl of cereal, bolted outside to start helping with the work. At thirteen, all he wanted to do was hang out with Will and his friends. Ethan took his time, dressed and ate slowly and carefully, situated himself on his walker and rolled to the back door.

“Hey, little buddy,” Jones said between loads of concrete mix he was carrying from the truck parked in the street in front of the house. “Need a hand down?”

“Can you take me over there out of the way?”

“You got it.” Once Jones got him past the stacks of lumber, Ethan struggled to the slope at the back of the yard so he could sit down and still see the work happening.

Sandra finished putting up the dishes from dinner the night before and looked out the kitchen window. She could see Ethan sitting in the yard, which gave her some comfort. There would be a lot of hazards while the porch was being built, piles of scrap lumber, nails, power tools. She wanted to make sure she could keep an eye on him.

Work moved along at a decent pace until late morning when it got really hot. The hammers fell with less force and accuracy. The tape measures were difficult to see through the sweat in their eyes.

“Let’s eat, guys!” Will couldn’t stand to check on the grill even one more time in that heat. The meat had to be done.

They sat around in the shade of the maple trees at the edge of the property and ate. The cold, sweating beers were refreshing. Once they had all had seconds they struggled to find the motivation to go back into that sun. They delayed.

“It’s too hot to run that saw,” Monroe said. “Why don’t we play a couple rounds of Annieover until it cools off a little.”

“I could go for that,” said Will. The game was one they invented a couple summers ago. It was a combination of tag, hide and seek, and dodge ball and involved the roof of the house. “Well, son of a bitch,” Sandra said. She knew they wouldn’t get back to working on the porch. They’d play until they were either too tired or too drunk to play anymore. Then they’d go home, take showers, and go to the Tightwad Tavern for the night. They wouldn’t get around to finishing the porch for another month or so, depending on how many weekends they spent at the lake on Monroe’s pontoon boat. “Too hot to work, but not too hot to run around the yard like idiots all afternoon.”

She was fuming mad, even though she had expected this all along. “We’re gonna have to live with a damned construction zone in our back yard all summer.” She was about to burst out the back door to scream at Will or Monroe, whichever one she saw first, when she noticed Ethan’s walker standing at the edge of the yard. He wasn’t next to it.

She scanned the yard in immediate panic. He’s gone. Someone took him! She thought before realizing that that would never happen, not in their town and not from a yard with a dozen drunk rednecks with hammers and power tools.

“Dylan,” she screamed. “Where’s your brother?”

“I don’t know,” Dylan yelled back without interest, not wanting to take his attention away from the game. “He was sitting in the yard last time I saw him.”

“Get over here and help me look.” She walked quickly around the back yard, searching around the tools and lumber, but he wasn’t there. He wasn’t on their property. How had she lost him? Where had he crawled to?

With each step she took she thought of a new danger that existed on their block. The trucker who lived up the hill drove too fast when he came home at the end of a haul to park his rig on the street. There weren’t sidewalks and Ethan would never be able to get out of his way if he happened to be coming home. There was the angry drunk three houses

down that was always shouting at people walking by. He also had three mean dogs that weren’t always tied up like they should be. What if one of them attacked Ethan? A creek ran right past their neighbor’s house. If he got too close he could fall down the embankment and into the water.

She rounded the side of the house where she could just see into the front yard. “Ethan, stop,” she said when she saw him. He was taking slow, careful steps on the gravel of the driveway, legs rigid. He stopped and almost fell as his momentum carried his upper body forward. He stood wavering, looking down at his legs. Sandra gasped as though he was teetering at the edge of a cliff.

“Come back, Ethan. You need your walker.” She was short of breath.

Sandra didn’t know that Ethan wanted to turn around to her and smile, to wave and tell her not to worry about him, that he was fine on his own, but doing any of those things would have made him fall down. He took another step and continued towards the street.

Dylan ran up behind Sandra and stopped. “He’s doing it!”

Sandra put her arm around his shoulder and leaned on him slightly. “He sure is, but I don’t think I like it.”

“What are you talking about? It’s great! It’s what you wanted, right?”

“It is, but I’m just so scared for him.” “He just needs practice. I’ll keep an eye on him.” Dylan shrugged off Sandra’s arm and ran to catch up with Ethan at the edge of the driveway. He gave Ethan a hug from behind, a little rougher than Sandra liked. She sighed heavily and smiled, glad that Dylan was there to keep Ethan safe.

Sandra felt the distance between her and Ethan grow as the two boys continued their walk along the street. She wanted to take back her wish that Ethan would someday be able to walk on his own. She would gladly accept the burden of having him around all the time. He wasn’t ready to be out in the world, but there he went.